Sepsis a personal story
Christina Rees MP
In the run up to World Sepsis Day, 13th September 2021, Christina Rees MP highlights her personal journey with the ‘silent killer’ of Sepsis — awareness is key
Sepsis is the immune system’s overreaction to an infection or injury. Normally our immune system fights infection, but sometimes for reasons which are not yet understood, it attacks body tissues and organs, and if not treated quickly may result in organ failure and death. Sepsis affects 245,000 and kills 48,000 in the UK every year.
In 2013, I was very fortunate to survive sepsis and when it has subsequently recurred, I am now so aware of the symptoms, that I seek urgent medical attention. But how I contracted sepsis remains a mystery.
My first experience of sepsis is blurry. I’ll tell you about the parts that I can remember.
It began in the summer of 2013 when I travelled to New Zealand to visit my daughter Angharad who was living and working in Te Anau, South Island. I began to feel unwell on the outward plane journey from Heathrow. I thought it might be travel sickness, which I’ve suffered from since childhood, but I’m usually sick on a car or bus, not when I’m flying. When I eventually landed in beautiful Queenstown airport, after a very long journey with multiple changes and short stopovers, I was so delighted to see my daughter after such a long time, that I forgot about feeling ill.
The following day, however, I developed what I thought was very painful toothache in the right side of my mouth. It had become very swollen overnight. I visited the local emergency dentist, and even though he couldn’t see a problem, he gave me a course of antibiotics, just in case I had an infection, and told me to take painkillers.
The swelling went down, but the pain got worse, so I returned to the dentist after a few days. He still couldn’t find anything, so I struggled on for the remainder of my three weeks stay, sustained by eating lots of painkillers.
When my holiday came to an end, and I returned to Queenstown airport to fly home, I was so upset at leaving my daughter that I didn’t realise how ill I’d become, until I started to vomit, which got much worse during the stopover at Singapore airport. But even then, I told myself that it was food poisoning. When you’re a vegan, airport and airline food is an adventure!
By the time we landed at Heathrow, I was in a terrible state. I got the Heathrow Express to Paddington and the GWR train to Wales, but I can’t remember much about this, because I kept falling asleep. I do remember my lovely friend Jen Smith telling me how awful I looked when she kindly met me from the railway station and drove me to my home. I thought it must be jet lag.
I spent the next few days in great pain, being sick, or trying to sleep, or taking pain killers. I have never felt so ill. I vaguely remember calling my boss at Squash Wales to explain that I was being sick all the time and being told to stay at home. I vaguely remember Jen taking me to my dentist after the right side of my face became even more swollen, and the dentist replacing a filling, which was so painful because the anaesthetic didn’t work, that I bolted from the chair to be sick. And being given more antibiotics.
I vaguely remember Jen driving me to A&E at my local hospital, stopping many times for me to be sick, and being diagnosed as suffering from a virus. They rehydrated me and sent me home with yet more antibiotics. I vaguely remember Jen taking me back to my dentist where I was seen by the head of the practice, who told me that there was something seriously wrong, and sent me to the Dental Hospital, which is at the Heath Hospital, Cardiff. I remember arriving at the Dental Hospital and being seen immediately, but I don’t remember anything else.
Jen tells me that I lost consciousness at that stage, and that I was taken immediately to the main A&E. They sent for a surgeon who told Jen that if he didn’t operate immediately, I would die, because I had symptoms of sepsis. He asked Jen to sign the operation consent form and if she thought I’d mind if he had to remove some of my face, because he had to remove some back teeth to cut away the infected tissue and insert a drainage tube to get rid of the poison that was killing me, and also administer intravenous antibiotics. Jen said, “just save her”, and she told him that I’m allergic to penicillin. The surgeon sent Jen home, because there was nothing she could do, until after the operation.
Jen and I share the same dry humour, and when she visited me on the recovery ward the following day, she told me that when she was driving home after leaving me to the hands of the surgeon, she was thinking about what she may have to tell my daughter in New Zealand ….“the good news is that you’ve inherited the house, but the bad news is you’ve lost your mother”.
I was so fortunate that Jen was persistent, so fortunate that the surgeon diagnosed sepsis immediately, and so fortunate that he saved my life. But others have not been so fortunate. In 2013, I’d never heard of sepsis, and I’m sure that at that time I was in the majority.
I was in hospital for a week and when I was discharged, I’d lost about a stone in weight, and was still very weak. I wasn’t told about the possibility of long-sepsis, or about post sepsis syndrome, because I don’t think that these conditions had been identified in 2013. I learned about the extensive reach of sepsis two years later when I became a member of the All Party Parliamentary Group (APPG) for Sepsis.
It took me many months to recover. At that time, I was a national coach for Squash Wales, physically fit and strong, and used to coaching on a squash court for many hours every day. But post sepsis, I was physically and mentally tired most of the time, and I had lost confidence.
In 2014 I started to have similar symptoms, but on the left side of my face. The pain escalated and my face became very swollen, but this time I was aware that it might be sepsis. I made an immediate emergency visit to my dentist. He took out the back teeth on the left side of my face, drained off the poison, and put me on more antibiotics. And two years ago, a very minor dog bite turned into another period in hospital, another operation to cut away infected tissue, and more antibiotics.
I thank the NHS staff, from the bottom of my heart, at all the hospitals that have treated me during my sepsis episodes. Without your care and dedication, I wouldn’t be alive to tell my story.
As I’ve already mentioned, when I entered Parliament in 2015, I joined the APPG for Sepsis, and was very honoured to become its chair two years later. Our APPG is guided by Dr Ron Daniels, and Sarah Hamilton-Fairley of the UK Sepsis Trust(UKST), which is a registered charity run by volunteers who have had personal experience of sepsis, and our purpose is to raise awareness amongst the wider public and Parliamentarians. We are very concerned that sepsis is under-diagnosed, under-reported, and under-recorded.
The UKST was established on 6th March (which is Ron’s birthday) 2010. In 2006 Ron produced “Sepsis 6”, a simplified care bundle, including source control and antibiotics, prescribing escalation to critical care when needed, and treatment coordinated by a senior clinician. This was rolled out nationally in 2007 and is now used in 99% of UK hospitals as well as in 36 countries.
In 2015, the UKST developed an operational tool called “Red Flag Sepsis” to empower junior professionals to act. In December 2016, Jeremy Hunt MP, who was then the Secretary of State for Health and Social Care, announced our public awareness campaign at a Parliamentary event. In 2016, NICE approved sepsis clinical guidelines, and provided formal endorsement of UKST’s care pathways, incorporating “Sepsis 6” and “Red Flag Sepsis”, which are now available across healthcare, including hospices, care homes, general practice, ambulance service, and hospitals. The TV programme Coronation Street has run a story about sepsis since 2018.
In April 2020, UKST recognised that recovery from Covid-19 was likely to bear a stark similarity to post sepsis syndrome (PSS), and that SARS-CoV-2 infection can cause sepsis, that survivors of Covid-19 would be at an increased risk of developing sepsis. As a result, UKST launched its “Blurred Lines” campaign and opened UKST services to Covid-19 survivors. “Blurred Lines” had a pro bono donation (circa £500k) for marketing space in National newspapers, glossy magazines, and large format city advertising in Birmingham, London, Edinburgh, and Glasgow. UKST nurses have provided to date, direct support to almost 7,000 Covid-19 survivors taking up 40% of their caseload.
“Sepsis Savvy” which contains an online game, an instructional video and online resources was launched in March 2021, and has been adopted by over 120 organisations, including Direct Line, Burger King, Microsoft UK, Edinburgh Airport, Cardiff Council, and Iceland Foods — which have also put sepsis messaging on over 100 million of their milk cartons by June 2021.
UKST has commissioned YouGov polls to assess the success of its awareness raising campaigns. The main question asked was whether people had heard of the term “sepsis”, and the results were as follows: 41% in September 2014; 45% in August 2015; 72% in September 2017; 80.5% in March 2018.
Disappointingly, this was the last poll commissioned, due to budget constraints, but in four years from 2014–18, the polls confirm that UKST has doubled the awareness of sepsis. As a charity, UKST relies on fundraising activities which were severely curtailed due to Covid-19. People who have been touched by sepsis are able to make direct and/or regular donations via the UKST website. Our supporters have been fundraising virtually at home during lockdown, for example — garden 10kms, pub quizzes, and community bake-offs. Since restrictions were eased, supporters have been able to return to popular physical challenges, for example — 5kms, 10kms, Half Marathons, Marathons, and our annual Cycle4Sepsis. UKST and our APPG have made progress in promoting sepsis awareness, but every day we learn more about the so-called “silent killer”. There is so much more for our APPG and UKST to do. We are now concerned about Antimicrobial Resistance (AMR), which is caused by overuse of antibiotics, but that’s another massive issue which needs investigating.
Christina Rees is the Labour MP for Neath